A good day, I guess

Today was full off so many things that were good or bad depending on how you view them.

First, I breathed heavily and for some reason that launched me into the PC tower on my desk. I almost started crying it hurt so much and shocked me. I took the brunt on the tip of my nose and my upper lip. I tentatively reached my hand up, fearing it would come away bloody. Fortunately, it came away clean. The small nose bleed did not start till a few minutes later. And my nose still hurts and coughs up a little blood now and then.

But this injury could be taken as bad or good. Bad because it happened, but good because of the placement. Much higher and my nose and glasses would have broken. Much lower and I think my front teeth would have been at least chipped.

After that I had a good holiday party lunch. Nothing bad there, except I got wine for my gift and I don't drink. But it is a very cool label.

Then I went to the hand doctor. A long wait, but it turns out my finger is not broken. Unfortunately, the doctor wasn't sure what was wrong, but her hypothesis was good. She thinks that I strained the muscle between my pinky and ring finger and that it keeps getting re-strained because my finger is not very strong thanks to Friedreich's ataxia. She suggested I tape it to the next finger and wait a few months.

See? Good it wasn't broken. Not good that we don't know for sure what's wrong and that it'll take months.

I had dinner with someone else in a chair and it felt good to give her solid advice. But she joked about people whose instinct on seeing a problem is to curse. "Hey," I thought, "a little cursing never hurts"

I'm putting it in the good-day category but reserve the right to make changes as needed.

My stupid finger

A few months ago, I banged the pinky on my right hand.

I wondered at the time if I broke it, but it wasn't swollen and didn't hurt bad after it happened. So I forgot about it.

Or I tried to.

I am off to a hand doctor tomorrow. My pinky pain has reappeared a few months ago. I thought it was some repetitive stress injury from my wheelchair or computer, but the pain lingers. Today, I banged it again and for a second felt like throwing up.

We'll see what happens. At least I'll know whether my hand was broken.

Falling apart

I am starting to think my pinky finger pain might be less related to a break and more related to some repetitive stress-type injury.

I had a makeshift joystick on my wheelchair for a few weeks that looked cool -- one of my nephew's bright neon green pencil holders -- but it might have pushed my pinky finger in unfriendly ways. I am back to the boring joystick now so maybe that will help.

The real problem is this tiny pimple on my back, which today felt like a dagger poking through me.

I assume it is a tiny pimple. I can't see it. It is possible, of course, that Mom and my sister are just telling me it is nothing, while in reality I have a huge parasite sucking me dry back there.

I doubt it.

Stupid radiator

When I die, I am thinking bout donating my body to science because I really want to know how many bones I have broken in my body.

My right big toe might be the latest addition to the list, which already likely includes my nose, various ribs, my hip and maybe my coccyx.

Strength is not an issue for my legs. I could be a star kickboxer if strength was all you needed. Unfortunately for my fighting career, you also need a little thing called coordination.

Lack of coordination is also why when stretching my leg in bed this morning, I kicked a metal radiator at full strength.

It hurt!

I realize that there are a few hurdles to the donating my body to science plan. First, why would scientists X-ray me to see how many bones I broke?

They are more likely to check out my irascible stomach. When my nutritionist heard how long my stomach has been out of sorts, she said, "you should go as soon as you get an appt."


Second and maybe a bigger obstacle, I'd be dead. But at least my toe wouldn't hurt.

A real leg show

It has taken the better part of 40 years, but I have finally found love. Or at least a part of me has. And who am I to argue if it is a mite incestuous: Beggars can't be choosers. The part is my legs.

I go to bed like I always do, with my legs not touching. But for the past few months, when I wake and it doesn't matter when, my legs are together.

I think the right leg is the pursuer. Usually, it seems to be the one that moves during the night. I often find it crossing my left leg at the ankle or bent at the knee and resting under my left knee.

I am so confused by this behavior. I hardly ever stir at night. Why now? What is going on?

It is also a pain because I can't tell where my feet are. So I feel something on my left side, try to move that leg, but it is in fact the right foot over playing footsie.

Why does love have to be so hard?

Matt knows best; it's kuru

When I read Gene Weingarten's The Hypochondriac's Guide to Life. And Death, I skipped a few sections even though it was hilarious.

I'm not, despite what most in my family would say, a hypochondriac. I don't worry that every cough is anthrax or every sniffle is swine flu.

No, I am not a hypochondriac … except when it comes to my stomach and both front and rear elimination ports. I am not sure why, but I am sure that these parts of me are going to fail so those were the sections I skipped.

These parts, it seems to me, are the most affected by life in a chair. They get crushed, squished and smashed daily.

The other reason is I have just been waiting my whole life for these things to go bad.

One of the first doctors I remember is the one who performed my meatotomy when I was quite little. I won't go into the gory details of this procedure, but it involves a scalpel and a male body part that should not be cut. I can't even link to a page on it because just the description makes me clinch.

As far as my stomach and the rear elimination portal, I remember as a freshman in college starting my day kneeling in front of my trash can drinking a spoonful of Kaopectate. I would drink it, raise one knee off the ground, then slam it into the floor to prevent me from gagging and barfing. Then I went on my way.

Over the years, I used various liquids to soothe my stomach and help things smoothly on their way even though that way is now crazily kinked from sitting in a wheelchair.

So when Mom told me the nurse admitted to her that yes, they had lost my urinalysis, I instantly thought the worst. Granted, my doctor, who ordered the retest of the urinalysis, is not worried. The first urinalysis found small amounts of blood in the urine, and my doctor thinks it was maybe some minor irritation or infection.

I know better. It us more likely ebola of the bladder, kuru of the prostate or perhaps the plague.

Tomorrow I will send them another specimen. Mom said the nurse was really apologetic, so I should give the doctor another shot. I will, mostly because it is too hard to change.

Oh, and Claren barfed on the living room rug tonight.

Jarred

My shoulder is bothering me. The swing-away arm on my wheelchair does not swing far enough away, so unless I maneuver carefully, my arm is unsupported and my shoulder winds up aching.

Normally, I do maneuver carefully, but this week has been hectic and I forgot one day. Now despite plenty of Advil any jarring of my arm hurts like blue blazes. And I go through a lot of jarring in a day. Trust me.

About the only bonus, when the pain causes me to almost throw my cup down at dinner, I do have an excuse.

Smokin' hot ankles, here i come

Apparently my ankles need botox.

I was accused of going Hollywood by a friend at work. But let me assure you that I will remain the same bitter person as always. I'll just have smokin' hot ankles.

I was at the orthotics place again -- I am getting a little depressed by my braces. At the beginning, the guy there was like, We'll make them so they help. They'll be good.

Today he said, There is only so much we can do with the braces. It is not the braces that are the problem. It is your feet.

The problem is apparently that my foot tries to touch the floor.

I know it is a little more than that but my foot is rarely at a 90 degree angle. Even at rest it sits at 30 or 40 degrees. This causes a problem in my chair because my feet slide off the foot plate. The braces fix that. They force my foot into a 90 degree angle. If all I had to do was sit, it would be awesome. I like how they feel when I am sitting. It feels right.

When I stand, either to transfer or at the toilet or wherever, the front of my foot tries to touch the ground. But I am in the braces so I start popping out of the braces, which leads to horrible rubbing pain that has caused me to sit on an open toilet when I was using it.

Today the orthotics guy again said I need to break down the tone in my ankle so it rests at 90 degrees. Unlike past times, though, he said I need medical help to break the tone, or loosen the muscles. Hence the botox.

There are also booties for when I sleep, which sound fantastic in August in a house without air conditioning.

He also said the best might be a physical therapist coming by a few times a week to help me relax the muscles. That guffawing you here is the sound of my insurer.

The doctor who recommended the braces has retired, so I don't know what will happen.

Not as bad off as Charlie

I feel like a fish somedays. Not like a trout or something swimming contentedly in the water. Something flopping unhappily on dry land.

My trunk muscles are poor and for some reason I notice it more in the last few years.

I lean over to grab Claren's leash or something, and I flop all the way on to the arm of my chair. If it weren't for the seat belt, I am sure I would do some damage.

I have sat here on the couch – safe from flopping –for more than an hour trying to come up with some humorous twist to make this sound less sad.

I started writing about poor Charlie the sunfish, who lived under a dock at a vacation house we frequented in New Hampshire. Charlie must have been caught 100 times and released by me, my siblings and cousins.

That did not pan out, not yet anyway, but now that I am thinking about him, you may see more of him here just yet. Even though the last time I saw him, he was flying into a tree from about 50 feet away. Not sure how I compare to that.

My left foot sucks

In almost every episode of the old Superfriends cartoon, one of the superheroes would be trapped and the villain would be about to triumph. The superhero (usually Superman) would say like "Must … break … free," and through sheer willpower he would escape, beat the enemy and save the Earth.

Superman never met a villain like Friedreich's ataxia.

Yesterday when my brother-in-law was almost killing me, I sprained the big toe on my left foot.

It hurts but not like it is broken, and Mom was able to look at it last night and it did not feel too swollen. I was a little worried that it might swell up overnight and I wouldn't be able to walk, but then I remembered I can't walk anyways. I just took some Advil and went to bed.

And it was fine this morning until I tried to put a little weight on and get in the shower. I wound up on the floor of the shower. Mom, who was right outside, heard the thump and asked if I needed help. I said yes and she got Dad to help me on to the shower chair.

As I was getting out of the shower, I again needed to use my left foot. I told my leg to put the foot on the ground and help me transfer to my wheelchair. I then watched as my leg tried repeatedly to obey my command, but each time my foot touched the ground it jerked up in the air. As I went through this little dance about five times, my right hand was sliding down the grab bar until it pinched my pinkie too badly and I had to let go.

This time I had to call for help, but Dad came and helped me into my chair. I shouldn't say helped; that seems to imply I was getting into the chair and Dad merely assisted. Dad deserves almost all the credit.

My left foot was dancing rather than helping Dad get me into my chair.

Cast party

This guy opened a utility knife and dragged it all the way down my left leg today, from just under my knee all the way down to my toes. Then, his hands stained red, he did the same thing to my right leg.

This was not a dream; Mom saw it all.

Let's see ... what did I forget to mention ... I know there was something ...

Oh yeah, I was at Orthotic Solutions getting impressions of my feet made for AFOs.

My rehab doctor (the one who suggested the Hun saddle) thinks I stand a better chance of keeping my feet on my chair if I have ankle braces. She also thinks they would help with transfers and trike riding.

It will be a plastic thing that runs along the bottom of my foot and up the back of my calf so it will keep my feet straight, rather than drooping and rolling as they tend to do now. A hinge in the back will allow me to raise and lower my foot as I normally would although it will limit the lowering.

I hope it is not too bulky or uncomfortable for me. They said the AFOs fit inside your shoes. You just take the insoles out.

After going through everything and deciding to get them, they made the foot molds. First they put a sock on and then they wrapped it with red fiberglass tape that they soaked in water and hardened up. It also ran and stained their hands (well, their gloves) red.

The most ingenious part to me was that they put right on top of the leg what looked like a real old electric plug -- super thick. It was just a cutting board, I guess. That is what they dragged the knife down. Then they cut off the sock, pried off the cast and taped it together.

At the end of the appointment there were two really lifelike red feet sitting on the counter.

Cold crap

It has been fall-like for the past two days. Nice weather, except I can't feel my feet.

From the town of Falls Church, Virginia ...

I am trying to decide what I will do when the straw that breaks my back falls. I know it is coming.

I dropped out of my horse show this month because my jaw makes it hard to talk to my horse and encourage her. Plus, I do clench my teeth when riding because I concentrate so hard. This morning the hot water did not work. After a plumber came, Dad now says that I was turning it the wrong way, but I have been doing it for months. Why would I suddenly go wrong? And I have been so hunrgy from not eating because of my jaw.

Obviously, when that final straw falls, the big desire will be to go on a multi-state shooting spree, maybe get a song written about me.

But I dislike guns and violence, and neither Claren nor I drive. My shooting spree would probably be me rolling down the bike trail with a supersoaker water gun shooting bikers who pass with no warning and other jerks. I picture Claren beside me pulling one of those Little Tikes wagons filled with extra ammo. Incidentally, this may be the coolest playset ever.

I could go on a drinking bender, but I dislike the taste of things alcoholic and I would probably just pass out or barf. Same goes for food, although I like it.

Perhaps the most attractive is spending all money on toys and comics, but let's be honest here: When do I hold back as it is?

Tomorrow I go to the dentist. Will headgear be the final straw?

Just jawing about the jaw

I had quite an educational day today. Actually, it started last night when I learned that a sneezing spell or just taking off your shirt can really hurt a tender jaw.

I had what seemed like an endless and very vicious sneezing bout starting at dinner and continuing for a while. At one point I asked joed to grab me a kleenex and he said sure, wandered out to where they were, looked right at them for a while, then brought back a magazine. Fortunately, his sister hooked me up with a tissue, and he did go get me one when we told him specifically what I wanted.

Like I said it could have been the sneezing that re-hurt my jaw or it could have been when I was taking off my shirt and it got stuck on my jaw. But it was popping like crazy when I went to work. I forced down one muffin, ignoring the pain, then tried the other one but had to give up.

I called Mom and asked her to call my dentist as it hurt to do anything that moved my mouth. When Mom called me back I learned the next fact: My dentist has a nice life, working four days a week. He probably works four 10-hour days, but nevertheless, he's got it good. Mom then got me an appointment with the physician's assistant at my doctor's office.

My dentist did have an emergency number, which Mom called and left a message, and when he called back I got some new mandible facts. He told Mom that there is a disc of cartridge between the two parts of the jaw and the popping of my jaw is the muscles trying to get it back in place. That made all kinds of sense. All morning it had felt like the jaw was misaligned and the pop would hurt like hell but then it would feel better for 30 seconds before it slipped out of place again.

He said to take Advil regularly and don't eat hard food and come in Tuesday like I was scheduled. Suck it up, basically.

I went to see the PA next. I told her what the dentist said and she agreed. I learned here that the doctor at the workplace clinic isn't the only one worried about my neck. She was feeling all over my neck, poking and squeezing. Finally, satisfied my neck was OK, she turned her attention to jaw. She asked me to open and close and when it popped said, Oh yeah.

She then told me that the jaw muscles are getting stretched by all this, so they are sore, too, and she said they are really powerful, more powerful than one's hamstrings. She said they tell you in med school never, ever to stick your finger in someone's mouth unless you don't want it anymore because the jaw muscles are powerful enough to bite a finger off.

That is about all I learned. As we were leaving the office, she said to a co-worker: Isn't that the cutest dog you have ever seen? But I already knew that about Claren.

Oh yeah, last one: Even if you are really hungry but can't eat anything because of pain, don't eat electric-blue Pez and a roll of Smarties right before you see a doctor. She is going to wonder why your tongue is blue.

Where do I exaggerate?

Note: I just read an article from the New York Times in which David Sedaris says he exaggerates for effect, especially quotations, saying, "Memoir is the last place you'd expect to find the truth." I was a little disappointed, like someone telling a kid that Santa Claus does not exist or telling a certain wheelchair user that doctors would never cure Friedreich's ataxia. Was the rude American in "Picka Pocketoni" really the spectacularly rude American that made most of my family cry with laughter as we each read the story on vacation? But then I felt liberated and unconstrained by such silly concepts as truth. In fact, given that he is a successful writer and I am not, maybe I should be constrained to exaggerate.

I did not escape unscathed from my fall last Friday night. A few days after the fall, my jaw started to hurt and pop every time I opened my mouth, whether to eat, talk or yawn. With the help of Advil, I made it through those days, and now it only pops 10% of the time. It still hurts, though. And my teeth are not lining up properly. I thought I had a dental appointment tomorrow so I could get it checked out then, but it is not till next week.

I think Mom suspects it is more from clenching my teeth, which I admit I do a lot. I myself would be skeptical because of the delayed onset of the pain. But I ate nothing after the fall that would create the problem, and a fall is always a good cause.

I could go to the doctor at work, but he would only be interested in whether I broke my neck as he is whenever I visit after a fall.

Your cut eyebrow looks fine, but are you sure your neck doesn't hurt? Even a little? he asked last time I went.

When finally assured that my neck was not sore, he asked how old I was. I told him, and he said: Oh, it probably will be. Your body's not young anymore.

I wish I were exaggerating any of this.

Christmas comes early for Mom

Mom has been badgering me for a while now: Why don't you go to the podiatrist to get your toenails cut? Your brother does.

I love my brother like, well, a brother, but he is only going to the podiatrist because his wife is making him.

My brother, who also has Friedreich's ataxia, also has health insurance. Don't get me wrong, I have something that pays some of my medical bills, too. It just isn't very reassuring to me.

It costs $40 just to go to a specialist, any doctor other than my primary care physician. That's $4 a toenail.

Mom bought that argument but said I should then let her cut my nails. Whatever, Mom.

She said I could really hurt myself, but I use clippers not scissors or a blade.

I finally gave in, though. I could not think of anywhere to cut them myself in my folks' house. I hope Mom is happy and is not expecting a Christmas present now.

Put me in coach

Dad put a drawing at the foot of my bed. It is from the 1982 NFC championship game when the Washington Redskins demolished the evil Dallas Cowboys. It shows the offensive line paving the way for John Riggins, who is shown as a tractor-trailer.

I must have looked like an offensive lineman when I went for my trike ride yesterday. Well, except I am not 6-foot-6, weighing 300 pounds. Actually, the only linemen-ish thing was that my feet were wrapped tightly in ace bandages.

I talked to a therapist about how my ankle splays when I ride, and she suggested an “AFO.” This kind of brace should help, but the wraps did mostly the same thing. They kept my ankle from giving out, so it was a good ride.

I want to get some new bike shoes, more high-top than my current shoes, and with the fancy laces that my new shoes have. You just pull them up and they lock, kind of. And I want to e-mail this guy and see if he uses any kind of braces, but I am more hopeful about riding than I have been in a while. Not that I'll be setting any speed records.

Yankee Piddle Dandy

As the country commemorates its freedom from tyrannical kings, I too am celebrating a liberation, too: from a tyrannical bladder.

Ever since I moved back home, I have been having to get up early in the morning to use the bathroom. And it is on the other side of the house. And urgency is a definite issue. It hasn't always been a leak-proof morning is all I will say.

Part of it is that Dad takes out Claren in the morning so I can sleep. This is great, but my stupid bladder misses that early-morning purge.

Like John Adams and the other founding fathers we took action. We ordered a urinal to keep by the bed. And this morning at 5 a.m., I used it.

Not that it is easy to pee when lying down. I may ask my 3-year-old nephew for tips. I was lying there, the urinal and body parts in place, and I was too nervous. I was screaming at myself to relax my muscles.

It reminded me of this test I have had twice. It involves a catheter, which fills your bladder so the doctor can see any trouble spots, like an Iraq in your bladder. You are supposed to tell them when you are full.

The first time I had it done was in a hospital and there was a friendly doctor who was marveling at my capacity. I told him I was full and he said, OK, just go. Talk about unrelaxed muscles. There was only a catheter down there. Finally, they hit me with a sedative and that apparently solved the issue.

The other time was in a doctor's office. No drugs in sight, except for a little numbing agent to get the catheter on it merry way. Again, I said I was full and the doc said just go. It didn't work then either.

Finally, I relaxed enough this morning and as I peed I hummed the Star Spangled Banner.

Rotten ride

My legs are failing me. Whether it is from years of misuse, like jumping off couches on to my knees, or from Freidriech's ataxia or disuse, I think they have just about had it. And I am just so angry about it.

I don't ask for much ... No, I do ask for much, I know. I just don't expect much to come from all my asking.

But I don't want to get worse. I have pleaded for that little nugget: just fucked, not really fucked.

It's happening, though. I went for a ride on my trike tonight and I could hardly make my legs pedal in circles. It wasn't that it was too high a gear or something. They just didn't work.

Mom said maybe we should look into a handcycle, but my arms get enough exercise. My legs need more, but they can't get it.

My transfers are worse, too. Instead of sliding straight from wheelchair to other seat and vice versa, it is more like a "U." I slide off one seat, then my butt falls till it is on my ankles, then I raise to my chair.

I hope I shrug this off and feel better tomorrow. I haven't ridden my trike in a while. Maybe I just need to reprogram my legs. It has just been a rotten weekend.

I started feeling rotten Friday because I realized that most of my friends are co-workers that I won't see till Monday. Friday night was Wii-filledf fun. Then on Saturday, I worked all day setting up a website for someone who decided they didn't like it after they told me just what they wanted. I spent all day Sunday mad about this, and then came the bike ride.

Scaring up some dates

I have to write about my riding lesson on my other blog, but apparently my heart is OK. I could not really understand what the doctor said – it was one of those automated phone lines -- but I heard words like "terrific" and "good." So unless he is a real sick son of a bitch, I think I am OK. Maybe, though, that is what SOB meant on my chart. "Play a sadistic SOB on the phone call."

I wonder if the cardiologist will give me a discount if I send him my co-workers; I fear I am scaring some of them.

A few days ago, I went to a morning meeting and a door was closed. But it is a light door so I just hit it with my chair. It banged open and I got a call from the meeting room: "Are you OK, Matt?"

Today I was leaving a meeting and I was paying attention to Claren and I ran into the wall. It made a resounding crash and half the people at the meeting were halfway out of their seats when I turned around to say I was OK.

I could have some cardio patients lined up; maybe instead of payment he'd get me a date with a nurse (it is a fine-looking office).